Numbers 37, 38 and 39 all in One Day

Today was another long and emotional day in what has been nine years of long and emotional days. We knew today would be logistically grueling, four doctors in one day is a tight fit under the best of circumstances. However, logistics soon took a backseat to emotions.

We started very early this morning with Max’s GI doctor who confirmed that Max’s labs were still high and the biopsy was absolutely necessary, there was really never any question but I think he wanted to assure us that we had made the right decision. When Dr. G turned to Max to ask him what questions he had about the procedure Max’s upper lip began to quiver and the tears started to fall. Max never, ever cries about these things and as if his tears weren’t gut wrenching enough he then buried his face in his hands crying and apologizing for crying all at the same time. By this point there wasn’t a dry eye in the room, including the doctor’s. It was hard enough to see Max so obviously upset but it was even worse to hear him apologize for being upset – I think he felt like he was letting us down by not being stoic. Have I ever mentioned how much this sucks? And so tomorrow morning at 8 am Max will have procedure number 37. It’s a scene we’ve played out over and over again, I will walk him into the operating room, hold the mask over his mouth while I hold him and he falls asleep.

We then moved onto ophthalmology, I was convinced they would look at Max’s eyes and tell me I was nuts, there was no problem with his ability to focus. I say convinced because I was really trying to block out that there might be another problem. Almost immediately the doctor knew exactly what the problem was, the problem with him knowing the problem? It means corrective surgery, procedure number 38, to tighten the muscles in Max’s eyes. It seems that his muscles are weakened and he is losing his depth perception. If left untreated he will lose this perception completely. This really does explains a lot, for years Max has had problems going up and down stairs, often bending over to almost a crawl as a toddler would when learning to climb stairs. We have always chalked it up to the fact that because we don’t have stairs in the house he just doesn’t get enough practice. Everywhere we went with stairs we would make him go up and down and up and down without any improvement. No wonder! He can’t judge the distance between steps, we have been pushing him for so long to do something he couldn’t see! Have I mentioned how much this sucks?

We finished out the day with cardiology. Unfortunately, Max’s aortic valve continues to leak “severely”. Although we haven’t seen the cardiac surgeon yet (we see him on Friday) the cardiologist told us that they had had a quick conversation and decided that doing a cardiac MRI now would not be useful because it’s been less than a year since the last one. This means it will need to be done in March so that they can better gage when they will have to replace Max’s valve, procedure 39. Again, have I mentioned how much this sucks?

So very long story not so short, we will be returning to Baltimore in March for procedure number 38 and further testing to plan for number 39. With three trips to Hopkins in less than a year I need someone in the family to get a job with the airlines. I wonder how Max would do pushing a cart up and down an aisle serving drinks?

So as not to make this post a complete downer I thought I’d include a picture of Max during his eye exam, those are some spiffy new glasses aren’t they?